At the tender age of fifteen, Sarah Caldwell learned that her father had been diagnosed with ALS (amyotrophic lateral sclerosis) and had only a short time left to live. In moments her life went from texting friends, going to gymnastics practice and family vacations by the sea to watching her father’s rapid, irreversible deterioration, a process that plunged her into deep depression.
But Jim Caldwell was a man whose indomitable spirit in the face of his suffering provided the ultimate inspiration for Sarah to transform her depression into a journey of healing and love. She learned to accept her and her father’s fate and became determined not to waste a moment of the time she had left with him. When her father passed away, leaving Sarah to face life without her beloved dad, she was determined again to continue on the path of hope and strength, making sense of her loss and honoring his life by helping raise awareness of ALS and money for desperately-needed research for a cure.
With a special foreword by former pro-football player Steve Gleason, Just To Make You Smile is the rare, honest, compassionate and bold account of a young adult’s process of watching a parent get ill and die, and the inspiration she hopes to impart by sharing her grieving process, deep inner growth and healing. By telling her story in its entirety, from the lowest depths of grief and depression to the heights of finding her inner strength, making a difference and carrying on her father’s fighting spirit, she hopes to touch the lives of others, especially kids with a sick parent, letting them know they are never alone on this difficult journey.
When she was fifteen years old, Sarah found out her father had the fatal disease ALS. Since then, Sarah has worked tirelessly towards her goals of raising awareness and funds for ALS research to honor her father and to try to help others who have this disease. In her dad’s last months of life on earth, she began her campaign by inspiring over 250 community members to get involved in the Walk to Defeat ALS for Northern New England as part of “Team Red Trekkers.” But that was only the beginning. Sarah has educated herself and others about the disease, developed a relationship with the staff of the ALS Association, and marketed several similar fundraising events throughout the area, inspiring and bringing the community together in a wonderful way. She continued all her work even after her dad passed away by creating a line of ALS awareness bracelets that she sold throughout the community and now distributes nationwide. It was no longer about just her dad; it was about helping others. Sarah made it her mission to carry on his legacy and to stay involved in a quest for a cure.
Sarah has received national recognition for her extraordinary advocacy and fundraising on behalf of the ALS Association. She traveled to Washington, DC in May 2014 to receive the Prudential Spirit of Community Award as Maine’s top high school youth volunteer. She, her mom, and sister Kathryn also attended the National ALS Advocacy Conference where they were able to speak with doctors about current ALS research, meet with others affected by this disease, and speak with members of Congress about current legislation that supported ALS research. Six months later, Sarah was invited to another ALS conference where she was able to meet with ALS researchers and learn about ways to further her ALS advocacy campaign.
Sarah has spoken publicly, been interviewed by televisions news stations, and created a video about her work with ALS. She also connects with other people and families who are affected by ALS, sharing her story and offering support. She has done an extensive amount of research on ALS and current clinical trials, compiling information from doctors, scientists, and ALS specialists she has spoken with, in addition to research done on her own. Beyond the tricky scientific aspects of the disease, Sarah is also able to explain ALS in a way that everyone can understand, providing metaphors and analogies to support her discussion of the disease.
Sarah knows first hand how difficult it is to watch a parent succumb to a disease like ALS, but she takes life’s most difficult challenges and tries to find positive ways to channel the pain into action toward helping others. She hopes she can inspire others to do the same.
Contributor: Holly MacEwan